Wednesday, July 10, 2013

I'm Still a Grieving Parent

I have hesitated to write this post for a while because I don't want it to seem like my life is all doom and gloom all the time. I also don't want to offend the friends I have that have physically lost children. But the emotions are there and I feel like if sharing my experience may help someone else understand, then it's worth it. So here goes.

I am a grieving parent. Nearly five years ago, I experienced the most excruciatingly difficult moment of my life when I was told that my newborn son had Down syndrome - an irreversible, "untreatable" genetic condition that would affect nearly every system in his body, delay his development and mean he will need care for the rest of his life. He was diagnosed after he was born. The prenatal tests that we had did not catch it.

Aside from actually losing a child, I can't imagine an emotional pain greater than that which I felt that day. My son was still in my arms yet every part of me felt like I had lost him. Gone was the child I imagined would grow up wanting to be just like his big brother. When we found out we were having a second little boy, we were delighted that we would have two boys to play sports, watch Star Wars with their dad and dream of being superheroes. I had been through this parenting thing already. For almost four years I had been the mom to my sweet little boy that was so excited to have a little brother. We had playdates with friends, he went to preschool and he loved to read books and play on the playground. By the time his little brother was born he was at the point where I could sit and watch him play instead of needing to follow him around. But all of those dreams for his younger brother were ripped away from me when the blood tests came back and confirmed our fears.

The best way I can think of to describe what it felt like is this: It felt like the doctors came to me the day after my beautiful, perfect son was born and told me that he was gone. That he had not survived and they were very sorry. But here was a different baby for me to take home. One that would be completely different from the one I had given birth to and carried for nine months. One that would have different needs and whose life would take a direction that I never could have imagined.

Another way to describe it can be found in Emily Perl Kingsley's Welcome to Holland. Emily is also the mother of a child with Down syndrome. Her story is much more eloquent than mine and helped me through some difficult days. But it isn't our whole story either.

I didn't reject my son after his diagnosis, I loved him desperately and would have done anything to change the path that had just been forced in front of us. I cried over the thought of how children would treat him differently as he grew up. I cried about how much more difficult it would be for him to learn everything that comes naturally to most children. I cried for our older son and how his life would be impacted by his younger brother's diagnosis.

Don't get me wrong, there is a lot of positive information out there about how people with Down syndrome are thriving in society today. We read books and stories that encouraged us and gave us hope. And incidentally all of those things that I thought he wouldn't do, he does (loves to "play sports", play Star Wars and wants to be EXACTLY like his big brother). But that feeling of loss was still there. It IS still there. Every single day I feel it inside me. I lost something that day that will never come back. We'll never be that "typical" family that we thought we would be.

We will give our son every chance and opportunity that we can for him to have a happy and successful life, but it won't be the same life that his brother and peers have. For almost five years our lives have been filled with therapy visits, doctor's appointments, a seemingly-never-ending list of additional diagnoses, endless hours of research, meetings with various administrators and officials who want to talk about everything that is "wrong" with my son and the undeniable feeling that I live in a bubble, looking at a world go by that I'm no longer really a part of.

Watching families and friends enjoying outings, vacations and weekends can be hard. I haven't felt relaxed in five years and don't see any chance of that feeling returning anytime soon, if ever. Parenting a special needs child - at least this particular special needs child - is exhausting. Bone numbingly exhausting. Every. Single. Day.

Don't get me wrong. I adore my son. I love my family. I pray that life won't always be this stressful and exhausting.

But I won't stop grieving. I won't stop longing for what I lost that day. I have met some amazing people that are inside this bubble with me, but I'm not sure I will ever stop wishing I was on the other side. Out there where we always thought we would be.

1 comment:

WOW...you have written words that I have felt ALL 15 years with Nicolas and the 10 years since I realized Maggie, too has special needs. It is really tough and VERY lonely inside that bubble. I SO get it. Everything.

About Me

Wife and mother to two little boys. Writer for About.com and a Pediatric Nurse. Busy doesn't even begin to describe my life. Having a son with special needs has changed everything about me and I'm learning more every day. Trying to find our way in a world that doesn't really understand what it is like to have a "disability". We're just loving our way through this life with our youngest son who has Down Syndrome, Celiac Disease and Asthma and his big brother who helps him every step of the way.